Clare is Felix and Lily’s mum, she lives in Tasmania with her family, When Felix was born everything was ‘normal’ until a rude encounter with the community child health nurse set Clare and her husband Mark on a path of medical investigation to a diagnosis that no one expected. Felix’s story is one of hope and learning to live with a special needs diagnosis but continuing to grow and exceed expectations.
As a new Mum you want everything to be perfect and these early challenges sewed seeds of self-doubt.
In April 2019, following a good pregnancy - albeit with gestational diabetes - our beautiful boy Felix was born. He was a little early, the labour was quick and he was on the smaller side at 2608gm. I struggled with breastfeeding with Felix from day one which resulted in nasal gastric feeding for the first week. He really struggled to latch and suck properly, and his weight gain was slow. As a new Mum you want everything to be perfect and these early challenges sewed seeds of self-doubt.
Once we were home, we had some assistance with the lactation consultant and had regular appointments with the Community Child Health nurse. Whilst Felix was measuring in the lower percentiles, he appeared healthy and happy. We felt we were creating a nice little rhythm to our family life.
An unexpected diagnosis
After 8 weeks undergoing all the routine checks, the nurse indicated that Felix's head circumference hadn't show the rapid growth that is normal at his age.
She informed me it was our fault he hadn't put on enough weight. His head obviously hadn't grown as we weren't feeding him enough and our home environment was obviously stressful and unhealthy, causing irreparable damage to our child.
I sat there stunned and was in shock. I tried to explain our home was a loving environment and we were doing everything possible to ensure Felix got enough milk but she wouldn't hear a word of it. In the end I said we will have to agree to disagree and I left.
In the car I burst into tears. Those ever-present seeds of doubt had just been fertilised. Whilst I knew that we had created a loving home environment, the scales and tape measure do not lie. What were we doing that could be contributing to Felix’s health issues? After some calm reassurance from my husband, we decided to pursue guidance through our local GP who specialises in paediatric health.
After a referral to an exceptional Paediatrician, it took another 7 months before we had a diagnosis. When it came it was such a shock. Felix was diagnosed with Hypoplasia of the Corpus Callosum, Microcephaly and Global Developmental Delay.
We soon learnt what this meant. The corpus callosum stretches across the midline of the brain, and is the superhighway connecting the left and right cerebral hemispheres. It is integral to fine motor function such as walking, talking and connects the emotional and logical regions of our brain.
Felix’s corpus callosum developed to around 60% and whilst it will not develop any further, additional neural pathways may be created through repetitive exercises and targeted therapy.
I feel like there is a real disconnect between allied health and specialists. Parents have to continually be the advocate.
Early intervention is key
Despite the rudeness of our Child Health Nurse I'm actually grateful. If it wasn't for her we may not have sought alternative advice and initiated the early intervention that we did.
We started Physio, Occupational and Speech therapy when Felix was 3 months old and 4 months prior to the diagnosis, which has had a huge impact on Felix's development. Felix is significantly delayed in all areas, however the prognosis of his development is unknown, and uncapped. We researched comprehensively and the consistent advice received is to start therapy as early as possible.
Whilst the brain experiences the most dynamic development in the first two years, it is never too late to develop new or improved function. There was a time when we were unsure if he would ever walk. We are thrilled to say he is now walking with the aid of a walking frame.
It was frustrating that despite the plethora of health professionals that interacted with Felix no one diagnosed his tongue tie until he was 1, and only after we specifically requested that this be checked. We had a similar experience with his hearing. The onus should not be on parents to figure this all out and ask the exact right questions to get results. I feel like there is a real disconnect between allied health and specialists. Parents have to continually be the advocate.
Disability does not discriminate in who it touches so whether through a lack of confidence, or cultural differences or any other reason, it is so sad to know that some mums are doing this alone which is why these networks are so important.
Learning to advocate for Felix
Felix's diagnosis exposed our family to NDIS (the Australian National Disability Insurance Scheme). Whilst we are eternally grateful it exists, it has been challenging to navigate. Having a network of other mums to connect with, whether through online forums, play groups, Early Childhood Intervention Programs, at therapy or socially has made the process a little easier. There is so much value in having a group of mums who can offer advice, share experiences or who understand the daily struggles of parenting a child with special needs.
I have met quite a few mums with similar challenges who were unaware of available networks, or from cultural backgrounds where the mum does not feel there is the support or acceptance of children with disabilities. Some parents do not feel that they can share with family or community that their child has a disability for fear of ridicule or being ostracised.
Disability does not discriminate in who it touches so whether through a lack of confidence, or cultural differences or any other reason, it is so sad to know that some mums are doing this alone which is why these networks are so important.
Another integral network are his health professionals. Coordinating Felix's therapy supports and specialists has been the biggest challenge. The best piece of advice I was given was from my amazing cousin Priyanka, (founder of The MTM) who told me you can sack your doctor, specialist or therapist if they are not working towards Felix's goals or best interests. At the time I remember thinking wow really, but she was 100% correct.
The most significant factor to Felix’s development has been the creation of his support network. We have built an amazing team around Felix, who are supportive and all working towards the same goals. Between his therapy team in Tassie, his team at NAPA, his amazing support worker and child-care we finally feel like we have the right team for Felix to grow.
It has taken a while and at times we have had to make hard decisions to change therapists. Priyanka also told me about NAPA for which I will be forever grateful. The dynamic progress we see from our 3 week intensive program is incredible and life changing for Felix. I really encourage everyone to try and get your kids into an intensive program or if you are lucky enough to live near one of their centres they also offer weekly sessions.
Moments with friends or family you trust are critical to keep going and provide that reassurance that you are doing a great job. In turn we can be part of that support network for mums in similar situations.
How do you keep going in the hardest moments.
Felix keeps me going on the hard days. His giggle is infectious, and he has the cutest smile. His determination is inspiring whether to walk or crawl or sit independently - he never gives up trying. Some days I'm still anxious of what the future holds for Felix, but most day I'm excited to see what Felix is going to achieve next!
My sister has been an amazing support and is always there to listen, offer good advice and regularly tells me I’m doing an amazing job. She really does lift me up and I don’t know where I would be without her.
Supporting a child with special needs, can feel overwhelming and all consuming. It can be hard to manage a little time for yourself which is so important for your own mental health. Moments with friends or family you trust are critical to keep going and provide that reassurance that you are doing a great job. In turn we can be part of that support network for mums in similar situations.
The first 2 years of Felix’s life have been a roller coaster of emotions. 2 days before Felix was born we unexpectantly lost my husband’s brother and a year later his father died. The week we found out Felix’s diagnosis we also found out we were pregnant with our daughter Lily.
Lily is beautiful and vivacious, and we often wonder whether she gets the attention she deserves. At every opportunity we try to do activities as a family and so far I think we are winning. We make each other smile and despite the fact that both children are not yet talking, the cuddles, smiles and connections you can have through a look are enough to know that we are doing the best we can. That they are happy and feel loved.
Our resilience has really kept us going, our ability to stay positive and knowing whatever life throws at us my husband and I are a team and we always support each other.
Up until now I have always been a very private person who struggles to share my emotions with other people, I have never been one to ask for help or post personal content on social media.
Since Felix’s diagnosis I have been looking to connect with other parents with children who have the same condition or similar challenges as our family. It has been hard at times to find advice and connections so I decided to share Felix’s journey in the hope I can help another parent going through what we are going through and to also bring awareness to Disorders of the Corpus Callosum & Microcephaly
To learn more about Felix, his diagnosis and connect with Clare follow them on Instagram @lifeas_felix.
